This is a story of my diagnosis of Parsonage Turner Syndrome. It is also my first reddit post.

July - 2011. I woke up at roughly 6am on another hot morning in Madison, Wi. This was actually somewhat usual for me because my girlfriend and I were training her new puppy. Suffice it to say, I am not a morning bird and the dog was not whining. I was acutely aware from the second my consciousness started to come to that my shoulder was in a shit-load of pain. Just to give some references for my pain tolerance: I've broken almost 20 bones, had compound fractures coming out of the skin, dislocated shoulder (before this happened - it'll become relevant), and 2nd degree burns. I haven't been shot, but I think I have a solid 'understanding' of what pain is. What I had, was damn near a 10/10 on the pain scale. So I sat in a desk chair in the most comfortable position without moving my left arm for an hour and a half until the first doctor's office opened. I called, the secretary said to come in, and I saw my first doctor. Dr. X had no idea how painful it really was, and neither did I because this was still just the onset. She made a guess, which was to give me muscle relaxers. I went home, took the relaxers, took more relaxers, took more relaxers, and then had my girlfriend call a different doctor. He couldn't see me until the next day. I went in bright and early the next day; shit, I didn't even sleep. Dr. Y told me after an x-ray and some light diagnostics that he had no clue what it was, but that it was apparent I was in some serious pain and sent me home with some 10/325 Hydrocodones. I thought at least this would subside some of the pain. I took the entire bottle and its refill (60 pills total) in 3 days, still no sleep at this point, and the pain was about at its peak (relatively, 12/10, which makes sense because this was a whole new pain that I had never come close to). I went back into the same doctor, told him the pain was even worse, which I probably didn't have to do because it was quite obvious just by my ever slight movements, and he sent me home with some oxycodones this time. Surely this would help a little more than those pussy painkillers he gave me last time. Nope. I was dealing with some pain in my left shoulder that I didn't think imaginable and continued to do so for a total of 14 days. All of a sudden, the arm that I couldn't move, or keep still enough for that matter, was suddenly without pain after 14 days. I mean, WTF? I finally was able to start sleeping again...staying up for 12 days with depressants flowing through your veins is not fun.

Jan - 2012. Took a road-trip to the Rosebowl to watch my Badgers take it up the ass by the Oregon Schmucks. On the way back, I was getting dropped off in Park City, Ut to go skiing with three buddies (I need to add that it was a badass, brand new mansion, ski in/ski out, lots of buds, and lots of whiskey). As I was getting my bearings back on the skis, I took a light fall and landed ever so gently on my left arm, and my fucking shoulder popped out. DAMNIT. FUCKING DAMNIT. At this point I made no connection between that and what happened the previous summer. I knew how to pop it back in because I had popped my right shoulder out a few summers ago. So I did so. Remember I said it'd be relevant? Bam. Then I proceeded to make a sling out of handkerchiefs and an ice pack from a plastic bag we were keeping our apples in. Apples for smoking on the mountain. No one wants to lose glass out there. Anyways, I continued to ski for the trip, popped it out again on the last day on another small fall, popped it back in, and went home.

March - 2012 By this point, my should was loose as a ______. I went in to get it checked out, knowing it was probably a torn labrum and I'd need surgery. I also had started to notice a cavity on my left shoulder blade. So I asked Dr. Z about it, he was pretty alarmed by the exaggeration of atrophy and sent me to a neurologist to get an EMG. Not pleasant. Dr. A (didn't think that one through) concluded that I had what is called Parsonage Turner Syndrome. During my "summer of pain" as I like to call it, my brachioplexus nerve, the lower motor neuron that innervates the muscles surrounding the shoulder cuff, had died and was no longer stimulating any of the muscles that it should have been. Ever heard the term "use it or lose it"? Well since there was no more innervation, my muscles were atrophying and slowly turning into scar tissue, a process that took about 2 weeks (about the maximum time that PTS pain lasts). At this point, being a neurobiology student, this finally all started to click and I started kicking myself in the face for not being able to self-diagnose. Long story short, I had a lack of muscles stabilizing my shoulder joint which led to the dislocation. Overall, very shitty. So if you ever know someone, or god forbide (notice I didn't capitalize god, redditors? Eh? Not bad for my first post...) this happens to you, you can maybe self-diagnose and get the proper pain meds (they say morphine is often needed to subdue the pain).

The muscle still has not grown back after one and a half years. Normal recovery time is around 2 years for 75-95% of cases, although it can take a decade. The prevalence is ~1.64 per 100,000 people and the cause is unknown.

If you have any questions I'll do my best to answer, although my credentials are a meer Neurobiology Degree and a current pharmacy student.

Most cases do not result in a relapse. One way that it has affected my life is I will not be skiing this year because the muscle still hasn't grown back (what a first world problem...). I am in pharmacy school so I do not work. However, this past summer I was able to landscape with no problem.

The only inhibiting factor is the tightness from the repaired labrum ligament which means I can't cock my left arm back as far. But anyone who has a torn labrum from dislocating their shoulder will experience that.

I have a hard time believing the prescription part of your story. In the us you cannot get an early refill for schedule II III substances so early without going through head ache. Also just the fact that you took that much acetaminophen in such a short amount of time would do a number on your liver. This is assuming it wasn't paired with aspirin or ibuprofen though I would imagine that would be harmful as well.

Not to mention the fact that an opioid naive person would typically have a hard time staying conscious with 20 x 10mg a day of hydrocodone.

Maybe I'm mistaken in some of your details. Could you explain?

I've been a chronic pain patient for several years. I have deformities in my spine and a full thoracic spinal fusion so I've gotten pretty knowledgeable about the pharmacology as well :)

Yes, it is not a common pharmacologic story. My doctor did have to call the pharmacy for me to refill. And he did tell me the effects on the liver, which I already knew but didn't really care about because the degree of pain. That is also a reason he bumped my third prescription up to oxycodone (percocet). And I agree, an opioid naive person would not have been able to handle that load. Besides passing out, they'd probably be vomiting as well. I was not opioid naive. Besides occasional recreational use, I have had a few surgeries. But yes, I was very tired, cranky, and quite frankly probably wasn't all there mentally by day 5.

You have a full thoracic fusion... how much mobility have you lost from that? Is there any possible treatment?

Surprisingly not much loss from the fusion itself. If you look at how the spine bends the degree in the thoracic area doesn't add much. On the other hand i am nearly two years post surgery and still have chronic pain and other ailments stemming from surgery. Sort of like the solution is worse than the problem.

I am glad to hear that you were taken care of in that regard. Most pharmacists I've dealt with would give you a difficult time even with doctors orders.

Oh and as you can imagine I have a pretty good opioid monkey on my back after 3+ years of heavy use :)

What is your treatment now? Electric stimulus? Any medications?
I'm actually surprised at the meds they gave you. Muscle relaxers barely help anyone. Something like gabapentin or lyrica would have probably been more effective as a first course

I'm sorry to hear that about your surgery. I wish you the best of luck because i know how cloudy my mind was on painkillers at times. Very difficult to do thoughtful work... although I didnt have to take them chronically as in your case. As for as treatment... none. There is no identified therapy that helps other than keeping range of motion which I haven't had a problem with for the most part. And yea, the first doctor, Dr X, was an idiot for giving me those. She took a blind guess. They did nothing and that's why I just kept taking them until my doctor appt the following day when I saw Dr Y.

No none that my doctor told me and none that I've found through my own research. Just have to wait for it to repair itself. They have found significant correlation between the duration of pain (usually from 3 days to 2 weeks, mine was 2 weeks) and the time to recovery... sometimes it takes 5 years. Some people need nerve transfers or nerve grafts... I'm going to the doctor in less than 2 weeks to see if I'll need surgery.